Fibromuscular Dysplasia Society Of America Inc

FMDSA IS A PUBLIC HEALTH CHARITY WORKING TOWARDS BETTER DIAGNOSIS AND TREATMENT OF FIBROMUSCULAR DISPLASIA (FMD). WE DO THIS BY BUILDING AWARENESS OF FMD, FUNDING RESEARCH ACTIVITIES, PROVIDING PATIENT SUPPORT, AND EDUCATING PATIENTS AND THE HEALTHCARE COMMUNITY.

PATIENT REGISTRY: IN 2007, THE FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA (FMDSA) BEGAN A DATA REGISTRY WITH THE GOAL OF INCREASING UNDERSTANDING OF FMD. THE GOALS OF THIS REGISTRY ARE TO IDENTIFY PATIENT CHARACTERISTICS ASSOCIATED WITH FMD, POTENTIAL MARKERS OF THE DISEASE, AND COMMONLY USED IMAGING AND TREATMENT MODALITIES. THE MICHIGAN CLINICAL OUTCOMES RESEARCH AND REPORTING PROGRAM IS THE COORDINATING CENTER FOR THE REGISTRY. THE FIRST PATIENT WAS ENTERED INTO THE DATA BASE IN 2009. OVER THE LAST YEAR, ENROLLMENT HAD SLOWED DUE TO THE PANDEMIC. WE ENDED THE YEAR WITH OVER 3,359 PARTICIPANTS IN THE REGISTRY.OUR GOAL IS TO CONTINUE ENROLLING PATIENTS AND ADDING ADDITIONAL CENTERS. THE REGISTRY DATA HELPED US TO LEARN MORE ABOUT FMD, HOW TO TREAT THE DISEASE AND HAS DRIVEN RESEARCH. WE ARE HOPEFUL THAT ONE DAY THERE WILL BE A CURE.

ANNUAL CONFERENCE: IN 2021 WE HELD OUR FIRST VIRTUAL MEETING OVER 900 PARTICIPANTS FROM 21 COUNTRIES. FMDSA CONFERENCES ARE HELD TO EDUCATE PATIENTS AND MEDICAL PROFESSIONALS ON THE TREATMENT OF THE DISEASE AND THE LATEST RESEARCH FINDINGS. THE MEETING BRINGS TOGETHER NEWLY DIAGNOSED FMD PATIENTS, THOSE WHO HAVE HAD SPONTANEOUS CORONARY DISSECTION (SCAD), CAREGIVERS AND MEDICAL PROFESSIONALS INTERESTED IN LEARNING. THE ANNUAL MEETING PROVIDES AN OPPORTUNITY FOR PATIENTS TO MEET OTHERS ALSO AFFECTED, THIS OPPORTUNITY IS ONE OF THE BIGGEST DRAWS. PATIENTS ALWAYS REQUEST MORE TIME TOGETHER. WE HOST A SEPARATE MEETING WITH ALL OF THE RESEARCHERS THAT ARE PARTICIPATING IN THE PATIENT REGISTRY TO GO OVER UPDATES, CURRENT AND FUTURE RESEARCH PROJECTS. THE FORUM HAS PROVIDED A PLATFORM FOR DIFFERENT RESEARCH PROJECTS INCLUDING BLOOD DRAWS, SALIVA COLLECTION AND QUALITY OF LIFE STUDIES. NO OTHER MEETING WORLDWODE ALLOWS SO MANY FMD PATIENTS THE OPPORTUNITY TO PARTICIPATE.

PATIENT SUPPORT:PATIENT SUPPORT IS A LARGE PROGRAM, DUE TO SO MANY PATIENTS GETTING DIAGNOSED WITH FIBROMUSCULAR DYSPLASIA. DUE TO THE DEMAND, WE HAVE CONTINUED TO GROW THE VOLUNTEER SUPPORT NETWORK. VOLUNTEERS HAVE BEEN IDENTIFIED IN THE US AND INTERNATIONALLY. MANY GROUPS HAVE EVOLVED TO THE POINT OF HOLDING LOCAL MEETINGS. WE ALSO OFFER SUPPORT THROUGH SOCIAL MEDIA PLATFORMS INCLUDING INSPIRE, INSTAGRAM AND FACEBOOK WHERE WE HAVE THOUSANDS OF PATIENTS PARTICIPATING. WE ARE ALSO ACTIVE ON TWITTER ALLOWING PATIENTS, CLINICIANS AND PHYSICIANS TO COMMUNICATE. WE CONTINUE TO ADD FMD MATERIALS AND VIDEOS TO OUR WEBSITE AND PATIENT TOOLBOX. WE OFFER FMD MATERIALS IN SPANISH AND JAPANESE AND CONTINUE TO COLLABORATE WITH INTERNATIONAL COLLEAGUES WHO OFFER MATERIALS IN MANY LANGUAGES. FINALLY, WE CONTINUE TO HOST AND PARTICIPATE IN PATIENT MEETINGS BUT DUE TO THE PANDEMIC THESE MEETINGS HAVE BEEN VIA ZOOM. PATIENTS GLOBALLY ARE INVITED TO PARTICIPATE.